“bilateral and symmetrical ‘‘fatty’’ non-pitting swelling usually confined to the legs and hips”

“feet are typically spared, giving rise to an ‘‘inverse shouldering’’ effect at the ankles.”

tenderness and bruising common

worse with puberty

misdiagnosed as obesity – but will not disappear with dieting

Not lymphedema because does not pit much (make dents when pressed on)

study suggested autosomal dominant in mostly females. (You have it – 75% chance your daughter will have it

I find, there tends to be very tender spots where superficial nerves traveling with blood vessels get irritated – I inject them with 5% lidocaine- 7.5% dextrose (spinal lidocaine) and that gives relief for a while.

Support stockings help as well but need to be custom made – and will be hard to get on…

4 Responses to Large Painful Legs Is Not Necessarily Obesity – Could be Lipedema – Blame Your Parents

Is this all you can say about this medical problem? It appears the author of this has never suffered with skin pain from foot to waist, when the skin is touched. Why is it I can go on web sites from Australia and England and they can go into detail about the decease, even have sympathy for the patient; but go on a Canadian web page and it sounds like the author is at a party? The doctors here in Canada have no idea what this decease is all about. Oh, “(You have it 75% chance your daughter with have it.)” This is explained no different than if you asked someone to pass the sugar. Talk about being superficial. There is a lot more to this illness than this guy knows about.
Look up another web site.
ouch – I can be very detached and coldly analytical sometime. Thank you for the wake up call there…
The whole point of this blog is to try and help pain sufferer with new options that are becoming available. I hear of severe cases committing suicide because they are told there is nothing that can be done and that just makes me sick.

– Besides injecting sites with 5% lidocaine, a new technique where the subcutaneous/intradrmal tissues are just injected with sugar water – D5W is growing in popularity. It is called neural prolotherapy. It originated in New Zealand by John Lyftogt, MD. and can be done simply by any doctor by just injecting the sugar water superficially in skin over tender areas until numb.

5% lidocaine numbing patches, or over a large areas using 5% lidocaine in a lotion with 10% urea to help penetration (Uremol lotion is such a lotion) is helpful in a similar condition:
Treatment of pain in Dercum’s disease with Lidoderm (lidocaine 5% patch): a case report.http://www.ncbi.nlm.nih.gov/pubmed/18346067

There is also a procedure mentioned in a German article that claims lipohyperplasia dolorosa it is curative called lymphological liposculpture.
Fatter through lipids or water. Lipohyperplasia dolorosa versus lymphedemahttp://www.ncbi.nlm.nih.gov/pubmed/20871969

Pain that severe (hurts to touch) smack of neurpathic pain and would benefit from amitriptyline or nortriptyline, and gabapentin or lyrica. Might be nice to get Vitamin D and B12 levels checked.

Intravenous lidocaine for the treatment of intractable pain of adiposis dolorosa.http://www.ncbi.nlm.nih.gov/pubmed/7129748
Attempts have been made to have pateint self- administer concentated lidocaine but it has to be given as two separate shots in case one is absorbed quickly intravenously.

– External pneumatic compression, and more recently, Cyclic Variations in Altitude Conditioning™ (CVAC) chamber (where air pressure is rapidly cycled up and down) could be helpful:
Pilot study: rapidly cycling hypobaric pressure improves pain after 5 days in adiposis dolorosa.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004643/pdf/jpr-3-147.pdf

Accept my condolences for your suffering and for the angst that it could be passed to one’s children..

If you are suffering (or think you maybe suffering) from any rare fat disorder including Lipoedema/lipedema and live in Australia New Zealand or the Pacific come join us for conversation, Information and support over at out Facebook group.

Support for those living with Dercum’s Disease (Adiposis Dolorosa), Lipedema (lipoedema/lipodema), Madelung’s Disease (Multiple Symmetric Lipomatosis (MSL)) and FML (Familial Multiple Lipomatosis) In New Zealand, Australia and the Pacific Islands.

At the age of 67 I have, after all these years, found that I have lipodema which I never knew existed. I thought what others did, that I was a greedy person who no matter what diet I tried, could not lose weight from my legs. I am in constant discomfort and pain and was fortunate enough to get physio at Waitakere hospital who helped me to understand this condition better.
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There is a treatment, initially called neural prolotherapy, where tender nerve tracts that can be felt in the skin are injected every cm or so superficially with a bleb of D5W sugar water – I add 3% glycerin as well. It could cool down limb pains some but needs repeated injections weekly until better. I also injected very tender spots (usually where a vein penetrates fascia) with concentrated freezing -lidocane 5% – if repeated several times can numb spot for weeks – month. Good luck
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